A lot of things happen when you turn fifty.
Your husband has a heart attack, your father dies and your mother, after
a long pause, turns to you and says, "I like you, you're funny, but I don't
know who you are." Fifty, they say, is a time for the getting of wisdom
but in my experience it is a time defined by hot flashes and flashbacks.
Curiously, these two conditions are perfectly compatible. The hot flash
wakes you up at 3 am, and forces you into a tepid shower, a minimal exercise
which nonetheless seems to stimulate the imagination. In my case, it is
time travel. My mind breaks loose and carries me back in time via a series
of startlingly vivid flashbacks, all of which feature my mother.

Flashback #1: my mother has just come home
from the hospital, where she has had her eighth child, followed by a hysterectomy.
She is in high spirits as she takes a bottle out of her bag and places
it on the mantelpiece. She turns to us and says with pride, "These are
my ovaries." She has affixed a label to the bottle and it reads: From Whence
You Sprang.

Flashback #2: I am leaving home to become
an actress. My mother and I are sitting in the kitchen, having a cup of
coffee. She says, "Just walk out there and plant your feet on that stage
and say to yourself, 'This is where I belong - this is where I have always
belonged.' And stop eating. You can't play Camille as if she were the captain
of a hockey team."

Flashback #3: We are at The Excelsior Hotel
in Florence and I have just been proposed to by a dashing Italian designer
of exciting, if dubious, pedigree. I find my mother in her room, in the
dark, lost in thought. She is sad and very still and says quietly, "It
goes quickly, you know, youth and beauty. It is a wonderful thing to have
and a terrible thing to lose and it is both wonderful and terrible to pass
the baton to your own daughter. Thank God for Spinoza."

Flashback #4: 1 am married and have had two
children in quick succession, both boys. My mother and I are sitting in
the front yard, watching them play. They appear to be smashing each other
with large sticks and Mother says, "They're sort-of cute when they're babies
but I think all boys between the ages of 15 and 25 should be incarcerated.
After that, they're divine."

Flashback #5: Every opening night of every
play I've ever done. On the opening night of "Hedda Gabler" I am standing
in the wings, waiting to go on, trying not to throw up, when I hear my
mother's voice coming from the orchestra, front and center. She is talking
to a stranger. "My daughter is playing Hedda and they tell me it's a love
letter to Ibsen."

Flashback #6: I am divorced and have taken
my two young sons to Ireland for the summer. Mother calls and says I must
meet her great friend, Tim Hagan, who will be in Ireland visiting the Ambassador
at the same time. I plead with her not to set me up with some over-eager
Midwestern politician and she assures me I will never go for him. Reluctantly,
I agree to meet him in the lobby of The TraLee Hotel. When he calls my
name, I turn and in that instant I lose my heart. This is the love of my
life.

Flashback #7: My mother and I are sailing
up The Aegean Sea on a beautiful boat which my mother has christened 'The
Floating Prison'. We are dining at the Captain's table when, very suddenly,
Mother excuses herself and runs from the room. I follow on her heels and
watch, in horror and absolute incredulity, as Mother loses complete control
of her bladder. Once inside the cabin, I help her remove her skirt and
ask her what is wrong. She looks at me blankly and says, "Oh, nothing honey,
I'm fine."

Flashback #8: Mother has fallen out of her
bed, broken her glasses, and gashed her forehead. She claims to have had
a small series of strokes. When the others leave, I probe further and Mother
confesses that she has seen spiders coming out of the wallpaper.

Flashback #9: I take mother to a neurologist.
After many tests, she is diagnosed with Alzheimer's Disease. We go for
a second and then a third opinion. They concur. She is strangely composed
when she asks me to meet her in her room for a 'heart-to-heart'. She is
alert, aware and fully cognizant of her intention when she asks me to find
the right combination of pills and put them on her bed table. "You see,
honey," she says, "I've never had anything but my brain to really love.
It's been such a wonderful brain and I don't want to go out without it."

Flashback #10: We are lying in bed, my mother
and I, and I have just finished telling her a story. I am stroking her
hair when she looks at me and, after a long pause, says, " I like you,
you're funny, but I don't know who you are."

Alzheimer's is not a disease so much as it
is a tragedy. Cancer is a disease, MS is a disease, Lou Gehrig's is a disease.
The body systemically falls apart and, in fairly short order, the person
dies. Often, one is able to say good-bye. This is not true of Alzheimer's,
in which death comes with aching slowness and leaves, in its' wake, utter
devastation. When you love a person who has Alzheimer's, and if you love
that person truly and deeply, the grief is almost unbearable because there
is nowhere to put it. You cannot give it to the caregiver because you must
honor and protect their well-being. You cannot give it to your siblings
because their journey is just as solitary and personal as yours. And you
cannot give it to the spouse because they are, themselves, trying to survive.
You can try to give it to your friends, you can have a few drinks and a
good cry, but this is almost always an exercise in futility because, in
the end, they cannot grasp the bizarre loneliness of this sorrow. You cannot
explain the curious mixture of rage and frustration, you are too ashamed
to
admit to your own selfishness and you are far too good and noble a daughter
to whisper to yourself that, perhaps, those pills might have been the best
idea. Instead, you get on an airplane that will take you home to see your
mother, and as you fly over the beautiful fields and valleys of your childhood,
the grief you have held in abeyance suddenly overwhelms you and you cannot
stop weeping, you simply cannot stop. And you know it will go on like this
for years.

How, then, does one make sense of this disease?
If you are lucky, like me, and have a modicum of celebrity, you can lend
your name to fundraising efforts or make the occasional well-meaning speech
on behalf of science and research. But if you are like the thousands, no
- the hundreds of thousands of others who have no recourse to help, no
understanding of the disease, and nowhere to turn, it must be living hell.
Typically, it is a daughter who takes over the care of her stricken parent
or, harder still, a wife who will insist that she can manage the care of
her husband. Often, there is little or no surplus money to provide relief
and so what began as a personal sacrifice becomes an overwhelming burden.
How long will the daughter last before she snaps? How long can the wife
be expected to endure her husband's mute belligerence, incontinence, refusal
to eat or sleep?

I have just come from my mother, who is in
the final stage of this disease. She spends most of her time sleeping or
staring vacantly into space. Occasionally, she rallies and will sit at
the kitchen table, where she is spoon fed her food. Her hands are like
small birds, agitated and constantly moving. Her words are mumbled, incoherent,
senseless, and yet they are laced with urgency - so much so that the listener
becomes convinced that she is desperately trying to convey a message.

But, of course, there is no message because
her brain is filled with plaques and tangles, deadly proteins and misfiring
neurons. The very idea of communication is absurd and yet we are so hungry
for recognition that we misinterpret the agitation as need, the mumbled
words as an expression of love.

I crawl into bed with my mother and decide
to spend the entire night with her. I want to observe, firsthand, the tricks
and treacheries of this disease, or perhaps I am secretly harboring the
hope that in the dead of night I will turn and she will be looking directly
into my eyes and she will say, clearly and softly, "I love you." I am the
first to fall asleep and am awakened at 4 am by my mother's voice, which
is a kind-of frantic humming. She is plucking wildly at the covers and
attempts to sit up. This she cannot do without my assistance and yet, when
I try to help her, her body has assumed a powerful rigidity and it takes
all of my strength to get her into a sitting position. I then immediately
understand the source of her distress; she has wet the bed and her pajamas
are soaked through with urine. She wants to move but she cannot. I sense,
in her helplessness, a deep and awful mortification. It takes me a full
two hours to coax her to the bathroom, remove her soiled clothing, sponge-bathe
her, replace her diaper and change her pajamas. Then I must change the
sheets and find a cool cloth for her forehead, which is suddenly and frighteningly
feverish from her exertions. Finally, I get her into bed, unlock her knees,
push her to the center so she won't fall out and sit there, stroking her
hair, until her eyes close. My touch seems to comfort her and she drifts
into a profound sleep. When I leave the room, her hands are clasped prayer-like
across her chest and her face is very still and very white. "Buried alive,"
I think to myself.

Now, it is early morning and I stumble into
the kitchen. The caregiver, Lucy, is already there, having spent the first
full night in three years with her husband. When she smiles, I fall apart
and sink into her arms like a small child. This is a miracle of a woman,
to have endured hardship like this for three long years without complaint
or resentment. What has nearly defeated me is nothing more than a nightly
ritual for her, exercised with infinite patience and grace. She assures
me that my mother has taught her how to love, how to be, and she refers
to my mother's disposition as one of great courage. "She is such a good
woman, Senora, much better than me," she says, and in that moment I am
in the presence of the most beautiful creature on Earth. I grasp, with
stunning clarity, the magnitude of my good fortune in having found this
extraordinary person.

I think to myself, but what of others, who
are less fortunate? What of their frustration, exhaustion, despair? And
I have not even touched on the insidious nature of this disease and how
it weaves itself like a poisonous ribbon through the family, unraveling
what was once whole and plunging each person into isolation. When you come
from a big family, as I do, the emotions elicited by this disease run the
gamut, daily, from impotent rage to bleak resignation. Tempers run high
and childish dreams are dashed. Mother will not be joining us for dinner
tonight. We have only each other, now, to fall back on and to forgive.

So, this is my story. I come here today to
share it with you because I know that for most of you, it is the same story.
Mother, father, sibling, lover, friend. It is the same story of loss and
grief, of knowing and not knowing. Some of you are suffering more than
others and some of you have come simply to listen and, perhaps, to learn
- but all of you are here because you have, in some way, been affected
by Alzheimer's Disease. Let me say, then, that this coming together is
all we really have. True, there is never enough money for research and
we must strive always, and on every level, to keep fundraising efforts
a vital part of the solution. But while science perseveres (and it is,
at this moment, making great strides) - we must find a way to help one
another.

I urge you to find your local chapter and
get involved. If you don't have a chapter, build one. Advertise in your
local paper, develop support groups, locate a neurologist willing and generous
enough to speak to your individual groups about the nature and progress
of this disease. Seek solace in one another and do your best to implement
practical measures in your respective chapters; find and train caregivers,
involve the entire family in discussions that will unify and fortify the
family base, start a volunteer 24-hr. hotline, get philanthropic lawyers
and local politicians involved by giving them leadership roles and try
to educate your community through newsletters and fundraisers. I realize
that all of these suggestions are easier said than done but I also realize
the growing need for individual chapters to be organized and sponsored.
I have visited many of them across the country, of all shapes and sizes,
and I can assure you that where there is commitment, there is success.
The key is empathy, and with that key the secrets of science will be unlocked,
doors will open into bright rooms of fellowship, mothers will prepare a
feast for their children and when they sit down at the table, she will
look at each of them in turn and say, clearly and softly, "Let us give
thanks."